scholarly journals Adapting to Multiple Sclerosis Stigma Across the Life Span

2019 ◽  
Vol 21 (5) ◽  
pp. 227-234 ◽  
Author(s):  
Lauren A. Spencer ◽  
Arielle M. Silverman ◽  
Jonathan E. Cook
Keyword(s):  
Multiple Sclerosis ◽  
Social Stigma ◽  
National Database ◽  
Research Committee ◽  
The North ◽  
The Social ◽  
Health Related ◽  
The Impact ◽  
Disability Level ◽  
Large National Database

Abstract Background: Most people with multiple sclerosis (MS) experience social stigma at mild-to-moderate levels, with potential implications for their health. However, little is known about how adults adapt to social stigma across their lives, or with respect to MS stigma in particular. Using a large national database and controlling for confounding demographic and health-related variables, this study examined whether longer MS duration was associated with reports of stigma in people with MS. Methods: Data were available from 6771 participants enrolled in the semiannual survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). Participants completed measures of MS stigma and reported on demographic and health-related covariates. Results: With disability level, age, and other demographic and health-related covariates taken into account, the longer respondents had lived with MS, the less stigma they felt. Results were similar for people's anticipation of stigma and their feelings of isolation because of stigma. Conclusions: As people gain experience living with MS, their adaptations to the social aspects of their illness may allow them to structure their lives so that they can mitigate the impact of stigma. Doctors, therapists, and other health care personnel should consider that patients with MS might be especially concerned and distressed by stigma earlier in the course of their illness.

scholarly journals Developing a crosswalk between the RAND-12 and the health utilities index for multiple sclerosis

2019 ◽  
Vol 26 (9) ◽  
pp. 1102-1110 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Brenden Dufault ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Health Utilities Index ◽  
Research Committee ◽  
Health Utilities ◽  
The North ◽  
Many Instruments ◽  
Related Quality ◽  
Health Related

Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index—Mark III (HUI3) in persons with MS. Methods: In 2018, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry completed the RAND-12 and the HUI3 to assess HRQOL. We used item-response theory (IRT) and equipercentile linking approaches to develop a crosswalk between instruments. We compared predicted scores for the HUI3 from each crosswalk to observed scores using Pearson correlations, intraclass correlation coefficients (ICCs), and Bland–Altman plots. Results: Of 11,389 invited participants, 7129 (62.6%) responded. Predicted and observed values of the HUI3 from the IRT-linking method were moderately correlated (Pearson r = 0.76) with good concordance (ICC = 0.72). However, the Bland–Altman plots suggested biased prediction. Predicted and observed values from the equipercentile linking method were also moderately correlated (Pearson r = 0.78, ICC = 0.78). The Bland–Altman plots suggested no bias. Conclusion: We developed a crosswalk between the RAND-12 and the HUI3 in the MS population which will facilitate data harmonization efforts.

Substantial adverse association of visual and vascular comorbidities on visual disability in multiple sclerosis

2011 ◽  
Vol 17 (12) ◽  
pp. 1464-1471 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry
Keyword(s):  
Multiple Sclerosis ◽  
Cox Regression ◽  
Cox Model ◽  
Contributing Factors ◽  
Visual Disability ◽  
Research Committee ◽  
The North ◽  
American Research ◽  
The Impact ◽  
Vascular Comorbidity

Background: Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. Objective: We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. Methods: In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about cataracts, glaucoma, uveitis, hypertension, hypercholesterolemia, heart disease, diabetes and peripheral vascular disease. We assessed visual disability using the Vision subscale of Performance Scales. Using Cox regression, we investigated whether visual or vascular comorbidities affected the time between MS symptom onset and the development of mild, moderate and severe visual disability. Results: Of 8983 respondents, 1415 (15.9%) reported a visual comorbidity while 4745 (52.8%) reported a vascular comorbidity. The median (interquartile range) visual score was 1 (0–2). In a multivariable Cox model the risk of mild visual disability was higher among participants with vascular (hazard ratio [HR] 1.45; 95% confidence interval [CI]: 1.39–1.51) and visual comorbidities (HR 1.47; 95% CI: 1.37–1.59). Vascular and visual comorbidities were similarly associated with increased risks of moderate and severe visual disability. Conclusions: Visual and vascular comorbidities are associated with progression of visual disability in MS. Clinicians hearing reports of worsening visual symptoms in MS patients should consider visual comorbidities as contributing factors. Further study of these issues using objective, systematic neuro-ophthalmologic evaluations is warranted.

The impact of sexual dysfunction on health-related quality of life in people with multiple sclerosis

2013 ◽  
Vol 20 (5) ◽  
pp. 610-616 ◽  
Author(s):  
Laura C Schairer ◽  
Frederick W Foley ◽  
Vance Zemon ◽  
Tuula Tyry ◽  
Denise Campagnolo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sexual Dysfunction ◽  
Short Form ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disability Level

Background: Sexual dysfunction is a prevalent symptom in multiple sclerosis (MS) that may affect patients’ health-related quality of life (HrQoL). Objective: The objective of this paper is to examine the impact of sexual dysfunction on HrQoL in a large national sample using The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19). Methods: Participants were recruited from a large MS registry, the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Participants self-reported demographic information and completed the Patient Determined Disease Steps (PDDS), MSISQ-19, and the Short Form-12 (SF-12). Results: The study population included 6183 persons (mean age: 50.6, SD = 9.6; 74.7% female, 42.3% currently employed). Using multivariate hierarchical regression analyses, all variables excluding gender predicted both the physical component summary (PCS-12) and the mental component summary (MCS-12) of the SF-12. Scores on the MSISQ-19 uniquely accounted for 3% of the variance in PCS-12 scores while disability level, as measured by PDDS, accounted for 31% of the variance. Conversely, MSISQ-19 scores uniquely accounted for 13% of the variance in MCS-12 scores, whereas disability level accounted for less than 1% of the variance. Conclusion: In patients with MS, sexual dysfunction has a much larger detrimental impact on the mental health aspects of HrQoL than severity of physical disability.

A contemporary profile of primary progressive multiple sclerosis participants from the NARCOMS Registry

2017 ◽  
Vol 24 (7) ◽  
pp. 951-962 ◽  
Author(s):  
Amber Salter ◽  
Nina P Thomas ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Ruth Ann Marrie
Keyword(s):  
Multiple Sclerosis ◽  
Progressive Multiple Sclerosis ◽  
Population Based ◽  
Primary Progressive Multiple Sclerosis ◽  
Research Committee ◽  
Primary Progressive ◽  
The North ◽  
Relapsing Remitting ◽  
Health Related ◽  
Relapsing Remitting Multiple Sclerosis

Background: Primary progressive multiple sclerosis (PPMS) represents 10%–15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. Objective: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. Results: Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort ( n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. Conclusion: The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.

Comorbidity, socioeconomic status and multiple sclerosis

2008 ◽  
Vol 14 (8) ◽  
pp. 1091-1098 ◽  
Author(s):  
RA Marrie ◽  
R Horwitz ◽  
G Cutter ◽  
T Tyry ◽  
D Campagnolo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Socioeconomic Status ◽  
Odds Ratio ◽  
Inclusion Criteria ◽  
Research Committee ◽  
Adverse Health Outcomes ◽  
The North ◽  
American Research ◽  
The Impact ◽  
Substantial Morbidity

Objective Multiple sclerosis (MS) is associated with substantial morbidity. The impact of comorbidity on MS is unknown, but comorbidity may explain some of the unpredictable progression. Comorbidity is common in the general population, and is associated with adverse health outcomes. To begin understanding the impact of comorbidity on MS, we need to know the breadth, type, and frequencies of comorbidities among MS patients. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we aimed to describe comorbidities and their demographic predictors in MS. Methods In October 2006, we queried NARCOMS participants regarding physical comorbidities. Of 16,141 participants meeting the inclusion criteria, 8983 (55.7%) responded. Results Comorbidity was relatively common; if we considered conditions which are very likely to be accurately self-reported, then 3280 (36.7%) reported at least one physical comorbidity. The most frequently reported comorbidities were hypercholesterolemia (37%), hypertension (30%), and arthritis (16%). Associated with the risk of comorbidity were being male [females vs. males, odds ratio (OR) 0.77; 0.69–0.87]; age (age >60 years vs. age ≤44 years, OR 5.91; 4.95–7.06); race (African Americans vs. Whites, OR 1.46; 1.06–2.03); and socioeconomic status (Income <$15,000 vs. Income >$100,000, OR 1.37; 1.10–1.70). Conclusions Comorbidity is common in MS and similarly associated with socioeconomic status.

Suicide Loss Survivors: Navigating Social Stigma and Threats to Social Bonds

2021 ◽  
pp. 003022282110265
Author(s):  
Dorothy M. Goulah-Pabst
Keyword(s):  
Social Stigma ◽  
Qualitative Interviews ◽  
Healing Process ◽  
Personal Narratives ◽  
The Body ◽  
Social Solidarity ◽  
Sociological Study ◽  
Social Challenges ◽  
The Social ◽  
The Impact

The complicated grief experienced by suicide loss survivors leads to feelings of abandonment, rejection, intense self-blame, and depression. Stigma surrounding suicide further burdens survivors who can experience rejection by their community and social networks. Research in the field of psychology has delved into the grieving process of suicide loss survivors, however the effects of suicide require more sociological study to fully understand and support the impact of the suicidal bereavement process on the social interactions and relationships of those left behind after death. This study aims to contribute to the body of research exploring the social challenges faced after the suicide of a loved one. Based on the analysis of powerful personal narratives through qualitative interviews shared by 14 suicide loss survivors this study explores the social construction of the grieving and healing process for suicide loss survivors. Recognizing that the most reliable relief is in commiseration with like experienced people, this research points to the support group as a builder of social solidarity. The alienation caused by the shame and stigma of suicide loss can be reversed by the feelings of attachment to the group that listens, understands and accepts. Groups created by and for suicide loss survivors should be considered a necessary tool to be used toward healing those who suffer from loss by suicide.

scholarly journals Disease-modifying therapy prescription patterns in people with multiple sclerosis by age

2021 ◽  
Vol 14 ◽  
pp. 175628642110064
Author(s):  
Yinan Zhang ◽  
Amber Salter ◽  
Shan Jin ◽  
William J. Culpepper ◽  
Gary R. Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Activity ◽  
Age Groups ◽  
The Elderly ◽  
Department Of Veterans Affairs ◽  
Real World Data ◽  
Research Committee ◽  
The North ◽  
Disease Modifying ◽  
Magnetic Resonance Imaging Mri

Background: Disease-modifying therapies (DMTs) for multiple sclerosis (MS) are approved for their ability to reduce disease activity, namely clinical relapses and signal changes on magnetic resonance imaging (MRI). Disease activity appears age dependent. Thus, the greatest benefit would be expected in younger people with MS (PwMS) whereas benefits in the elderly are uncertain. Methods: Real-world data were obtained from PwMS from the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and the US Department of Veterans Affairs Multiple Sclerosis Surveillance Registry (MSSR). Results: 6948 PwMS were surveyed from NARCOMS, and the MSSR had 1719 participants. In younger adult PwMS 40-years old or less, 183 (61.4%) in NARCOMS and 179 (70.5%) in the MSSR were prescribed DMTs. Among PwMS over age 60, 1575 (40.1%) in NARCOMS and 239 (36.3%) in the MSSR were prescribed DMTs. More PwMS in the age group of 31–40 ( p = 0.035) and 41–50 ( p = 0.001) in the MSSR were using DMTs compared with PwMS of the same age groups in NARCOMS. Conclusion: These findings suggest that DMTs are under-utilized in the younger population and continue to be commonly prescribed in the elderly. Broader access may explain the higher prescription rate of DMTs in US veterans.

Validation of the NARCOMS Registry: pain assessment

2005 ◽  
Vol 11 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Timothy Vollmer
Keyword(s):  
Multiple Sclerosis ◽  
Convergent Validity ◽  
Disease Duration ◽  
Self Report ◽  
Research Committee ◽  
Retest Reliability ◽  
The North ◽  
Disability Status ◽  
Pain Question ◽  
Test Retest Reliability

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a multiple sclerosis (MS) self-report registry with more than 24 000 participants. Participants report disability status upon enrolment, and semi-annually using Performance Scales (PS), Patient Determined Disease Steps (PDDS) and a pain question. In November 2000 and 2001, we also collected the Pain Effects Scale (PES). Our aim was to validate the NARCOMS pain question using the PES as our criterion measure. We measured correlations between the pain question and age, disease duration, various PS subscales and PDDS to assess construct validity. We correlated pain question responses in participants who reported no change in PDSS or the PS subscales between questionnaires to determine test—retest reliability. We measured responsiveness in participants who reported a substantial change in the sensory, spasticity PS subscales. The correlation between the pain question and PES was r=0.61 in November 2000, and r=0.64 in November 2001 (both P<0.0001). Correlations between the pain question and age, and disease duration were low, indicating divergent validity. Correlations between the pain question and spasticity, sensory PS subscales and PDSS were moderate, indicating convergent validity. Test—retest reliability was r=0.84 (P<0.0001). Responsiveness was 70.7%. The pain question is a valid self-report measure of pain in MS.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

Advanced marginality and stigma

2018 ◽  
Author(s):  
Ian Cummins
Keyword(s):  
Social Work ◽  
Substance Misuse ◽  
Social Ties ◽  
Social Stigma ◽  
Sense Of Self ◽  
Poverty And Inequality ◽  
The Social ◽  
Psychological Impacts ◽  
Self Worth ◽  
The Impact

This chapter explores the social and psychological impacts on poverty and inequality through the concepts of ‘advanced marginality’ and ‘stigma’. The analysis of social stigma is influenced by Loïc Wacquant's argument that the ‘underclass’ discourse corrodes not only social ties, but also the sense of self-worth of people living in the poorest areas and communities. The majority of social work takes place in these communities, where high rates of poverty, poor housing, high rates of crime and problems such as substance misuse are common. The chapter first considers the term ‘underclass’ before discussing the notion and implications of the term ‘advanced marginality’. It then examines E. Goffman's notion of stigma, Wacquant's arguments regarding ‘territorial stigmatisation’, and the impact of stigma and its links with modern representations of poverty. Finally, it describes the dynamics of anti-welfarism and uses the case of Mick Philpott to illustrate the ‘benefits brood’ stereotype.

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